Lockdown Podcast: Leading Writer Rebecca ‘Bex’ Fyans MBE, Naval Servicewoman of the Year.
Series 2, Episode 7
“It’s not something to be scared of… they are a little bit different, but with the right care and nourishment they can thrive and they can be awesome.”
When Bex’s son was born with Down’s Syndrome, being his advocate became her sense of purpose.
Since then, Bex has helped to support other families who have children with Down’s and has been working to raise awareness; volunteering with the Portsmouth Down Syndrome Association, Chronic Conditions and Disability in Defence Network (CanDiD) and the Royal Navy Disability Network/Team – working to shine “a spotlight on disability and carers in the Armed Forces”.
Which leads us on to ‘Lots of Socks’… “What have socks got to do with any of this?” you might ask. World Down Syndrome Day on 21 March of course!
So this is why we’ve been posting photos onto social media of ourselves wearing odd socks, thousands have been uploaded globally – the odd socks are signifying the uniqueness of having three copies of Chromosone 21, which causes Down’s Syndrome.
Bex’s passion for making a change has been recognised with an MBE for her work with inclusion and diversity in the MOD and the local community; and Bex was recently awarded Naval Servicewoman of the Year.
Bravo Zulu Bex!
Boris Johnson 00:02
You must, stay at home. Stay at home.
Rachel Owen 00:09
Hello and welcome to ‘Lockdown!’ Hosted by Steve Bomford with Mike Davis-Marks. Our Armed Forces operate in challenging environments. Week-by-week, we’ll explore what we can learn from their experiences.
Mike Davis-Marks 00:24
Hi Steve, I hear you’ve just interviewed the National Service Woman of the Year?
Steve Bomford 00:30
And MBE, yes, Bex Fyans!
Mike Davis-Marks 00:32
Yes, I understand she’s a Leading Writer in the Navy and we can explain what that is after the interview. But I’m looking forward to hearing her story.
Steve Bomford 00:41
Yeah, it’s a fantastic story, I think you’re going to enjoy this one. First of all Bex, I’d like to say thank you very much for coming onto the podcast; and also congratulations for being awarded, if that’s the right phrase, Naval Service Woman of the Year.
Bex Fyans 01:00
Thank you very much for having me, Steve. I’m so blown away actually, by having that nomination. Really, really happy about that.
Steve Bomford 01:10
How did that come about? What was the process for that? Because I didn’t know anything about it until you mentioned it to me.
Bex Fyans 01:16
Well, last year was the first ever award given; and at a really, really fancy conference, which was awesome in Yeovil and Princess Anne was there. And I got to meet her. And I got an email a few months ago saying that I’d been nominated for an award and they said, ‘If you don’t hear anything back by next week, then you won’t have the award.’ And I didn’t hear anything back and I thought, ‘OK, so somebody else has got it you know, I don’t mind, I’ve had a few awards. And then I yeah, I had a knock at the door and a plate presented to me with some flowers and some champagne and I was over the moon. I’m really, really excited, really happy and yeah, really honoured as well.
Steve Bomford 02:05
Congratulations, again, very, very well done. Just a shame about the fancy award ceremony not happening this year because obviously of COVID.
Bex Fyans 02:12
Exactly, it was all virtual. And I did get dolled-up, put on a dress and you know, did my hair and make-up, first time in ages actually; and it was a one-way virtual conference. So… (laughs) the boys liked me getting dresse- up, of course, which is really good. I’ve got another one at the weekend, Women in Defence Awards, I haven’t been nominated for any awards but I’m really, really pleased to be invited as one of the VIPs to attend. So that’s really good.
Steve Bomford 02:37
It is indeed, well done. So, let’s let’s carry on talking about yourself. So, I’ve got some questions for you. I will start with, so since joining the Royal Navy, you and your family have been on quite a journey. Can you tell me about that? And this is obviously part of the reasons why you’ve been nominated, I suspect?
Bex Fyans 02:54
Yes, yes. So around 2007, I joined the Navy. But before that I’d done a bit of travelling, worked in HR, got a bit bored of being a Civvy if I’m honest. And did my training, joined my first ship and that’s where I met my husband, Mike, who’s a Stoker. And yeah, we were best friends for a few years before we got together. And then we decided to have children. And we got pregnant with Sebby, we’d been on quite difficult journey before then, we’d already had three miscarriages before then. And it was at the 12 week scan when, as you can imagine, by this stage, the pregnancy, because of what I’d been through, I was already quite nervous with everything; and at the 12 week scan, it took ages to find baby and then they had to measure everything and then they told me that we had a one in two chance of our baby having Down’s Syndrome. So they took us into the what we call, ‘the room of doom’, and yeah, so we sat in there and the practitioners told us that because we had a one in two chance of having a baby with DS, it might not survive, might self terminate, might be born with severe disabilities; and we could either choose to have it terminated or get it adopted. I wasn’t in the best place actually from that, from them telling me that our baby was going to be born with Downs syndrome. We dealt with it very differently my husband and I. That weekend, I went away and did all the research under the sun, you know, looked at YouTube videos, I contacted the local organisation, the local support group, who were fab. And my husband didn’t deal with it at all. He he just said, ‘I’ll deal with it when it’s born. You know if it happens, it happens if it doesn’t, if it doesn’t, so there’s no point in worrying about it until then.’ And yeah, so Sebby was born with Down’s Syndrome, eight weeks prematurely. He was born at 32 weeks, and we didn’t have any amniocentesis, which is the test where they put a really long needle into your womb, we didn’t have that because of the increased risk of miscarriage. And so when Sebby was born, I could obviously see it straight away. And that was when it hit my husband in the face, like a plank of wood. There it was, you have a baby with a disability. So he was in shock for quite a while. And I just was you know, I was loving my baby. He was early so he was whisked off to NICU straightaway. But yeah, I mean, that’s when things really just changed I think for the both of us. Life it changes anyway, when you’re a parent, doesn’t it?
Steve Bomford 05:36
Bex Fyans 05:38
And, yeah, it was opening our eyes to a lot of things, how they treated us because I was put in a separate room, so I woke up without my baby, he was in NICU, which I found really odd. And because he was prem, he needed lots and lots of attention and the hospital only gave me a little booklet about Down’s Syndrome and what it was and it looked really outdated. And, you know, when you feel like you’re getting those sorts of looks? ‘Oh, I, you know, I don’t really know what to say to her’ and all that, all those sorts of feelings and emotions and, and I thought that what I’d like to do is to use our journey and put it into something good and turn it around. So from, from day one, basically, when Sebby was diagnosed, I was already planning things in my little notebook about how I was going to change the future.
Steve Bomford 06:31
Just like that?!
Bex Fyans 06:32
Hopefully! (Both laugh)
Steve Bomford 06:34
I like the attitude, the positive attitude, that’s really good. So, I can’t say I’m an expert on this subject. But what is Down’s Syndrome? What are we talking about here?
Bex Fyans 06:44
So, Down’s Syndrome is when an individual has three copies of Chromosome 21. So a typical person has 46 chromosomes, and you get some additional syndromes, where you have extra chromosomes. And obviously, Down’s Syndrome is three copies of Chromosome 21 and that’s where the world Down’s Syndrome Day comes from, the 21st of March. And it’s a very big day, our community get together, basically to raise awareness. So people that have never been in contact with anybody that has Down’s Syndrome, we tell them about it, you know, it’s not something to be scared off, they are a little bit different. But with the right care and nourishment, then they can thrive, and they can be awesome.
Steve Bomford 07:27
I did read actually whilst doing some research for this, about the massive increase in life expectancy of people with Down’s, which has changed enormously, hasn’t it over the last few, well probably the past 20 or 30 years?
Bex Fyans 07:37
It has but as recently as the 90s, people were still put in institutions away from their parents, because that was believed that it was the best thing to do. Some, in some countries, foreign countries, still, they do that. But with the right support, as I say, and we’ve been involved with Portsmouth Down Syndrome all the way along, and they’ve done some amazing work to encourage people in the community to accept people with Down’s Syndrome, but people with disabilities and differences in general. And, you know, it’s nice to say that Sebby is eight years old now and he goes to a mainstream school. He has lots of support there. But you know, he’s grown up with his friends. And it’s really, really refreshing to see.
Steve Bomford 08:25
Fantastic. So I think it’s fair to say, Sebby has changed your life in more than one way?
Bex Fyans 08:31
He has, yes, he has. So a little bit about what happened to me. When Sebby was born, we said to the Navy that you know, our son has a disability. I applied for a career break. I had three years off. Little did I know that I wasn’t going to sit around for three years and be a mum (laughs). Not that there’s anything wrong with that. That’s an amazing job, but I just, I just needed something else. So I decided to get involved with the local support group, the Portsmouth Down syndrome Association. I first started off doing some administration for them, and then I became a Trustee, which was a really really proud time for me. And during my time with them, I think it was with them five or six years, I took the role of Trustee Secretary for a time being and New Parent Liaison. During my time with the Portsmouth DSA, I got involved with fundraising, I organised an abseil down the Spinnaker Tower, a skydive, raised up to about 50,000 pounds with the help of lots of other people. I regularly spoke at council training events. I went to colleges just because you know, everybody that I knew, I just said “Do you want to come speak to students, do want to come speak to a school? I’d really, really love to just let you know about some things about DS you know, just teach you, bring Sebby in and show you that he’s nothing to be scared of he’s just an adorable little boy.” So I did, I did lots with the Portsmouth Down syndrome Association. And one of my proudest things that I did do with them was, I took on the role of New Parent Liaison. So when somebody would have a diagnosis, they’d contact the charity, and I’d try and mentor them through their pregnancy, which was a really, really good time for me. Hard because I had a few lessons to learn along the way, because although Sebby’s turned out, you know; with Down syndrome, there’s no, say how they’re going to turn out. They can be born with heart conditions, other medical conditions, hearing, sight, speech impediments, all these types of things. And I, when I first started the job, I thought that they were all going to be like Sebby, the children when they’re born, but you know, no, children are the same. So I had to learn a few hard things along the way. But yeah, really, really a good job doing that. And it took up quite a lot of my time and I dedicated a lot of time to the charity, lots of fundraising, you know going and shaking buckets, we did the Great South Run every year. It was brilliant, really good community to be a part of. And then sadly, my career break came to an end. I had Ben, who’s my youngest, he’s now five going on 15, I think, little monkey that he is. And he came along and maternity leave was up. So I had to go back to work. And again, I couldn’t just go back to work. I was still very passionate about making a change and being very involved in Portsmouth Down Syndrome Association. So I remember one year for World Down’s Syndrome Day, at Navy Command HQ in Portsmouth, we organised a Bake Off. So all these people bought in their cakes and an Admiral got to taste the cakes and say, which was the best. And I think at that event, I raised about five or 600 pounds. And it was from that bake sale, I was in the Navy News, and you know all over the Navy social media. But it’s from that bake sale, I received an email, which I’ve always remembered, you know, I never forget it. A Warrant Officer who was going through a similar thing, he was a carer. And he suggested that I get in touch with a lady called Major Mandy Islam who was setting up a network in defence. And I thought, ‘Oh, you know, this sounds a really, really interesting thing to do.’ But I was a little bit worried at the time, if I’m honest, you know, I had two children, a husband at sea, me in a full-time role. I was doing a voluntary job with a local charity. And then taking on another voluntary role. People always said to me, “How did you do all that?” I really don’t know.
Steve Bomford 12:44
How many hours a day do you have? Seems like twice as many as me.
Bex Fyans 12:49
I used to log on when the boys were in bed and I used to send charity emails, or during my lunch breaks, and yeah, I was just crazy for years, several years really busy. But it was, it was good. It was what I needed, I think at the time. So I got in touch with Major Mandy Islam and she asked me to be an Executive Member of the CANDID Network, which is the Chronic Conditions and Disability in Defence Network. So it was around June 18 and it was still growing at that time. We launched our network in the RAF Club in London, which is a lovely, beautiful building and there were lots of ministers there and very, very senior MOD officials. And I did a speech, it was a very, very good speech. I brought the room of about 80 people to tears, I think, with with my story, very powerful. It took me weeks to write my speech. And yeah, from then, I think because you’re networking, your name gets out, people know who you are, I started to be linked to different networks, to the Forces Federations, to Service charities, to all sorts of places, which was really, really good. And I think the power of networks is so important. From the CANDID Network, out of that came the RN Disability sort of Network, or Team if you want to call it that, which is championed by Rear Admiral Paul Marshall. He came on board, very, very passionate about making a change and my sidekick was at the time Commander Kay Hallsworth, we bounced off each other and we taught each other so much and during our time together, we organised the first ever Royal Navy disability conference, sort of like a stakeholders event. So we got a few Commanding Officers in from local units. We used people’s lived experiences. We talked to them about carers, about people with disabilities and severe illness, you know, what they go through, taking them on our journey and just making them understand what it’s like to be us and hopefully opening their eyes really. So, from all this work, we’ve sort of shone a spotlight on disability and carers in the Armed Forces, which has just massively grown ever since I started. And it’s not all just me. And I’m not saying it’s just me. The team, the other CANDID Network Executives, they’re all sort of, got a team from the Army, RAF and some civil servants as well. And we’re all bouncing off each other. We’re all amazing people that have different experiences. I think that’s what helped us work so well. So the disability conference, yeah, I mean, it’s been awesome. It’s been a really, really good few years, we’ve achieved so much. And people are talking now about disability when they weren’t before. It was only yesterday, there was a video on Twitter of the Second Sealord talking about his neurodiversity, which you just, you know, you don’t expect to see that. That’s brilliant. He’s putting himself out there. And we love to see that. People are talking about disability and about carers, people are starting to open up. I think in the caring community. A lot of people don’t class themselves as carers because they feel that it might affect their promotion, or their draft, or their job. You know, when we join the Royal Navy, or the Air Force or the Army, we don’t decide to become a carer, it’s forced upon us. And we have to take on that role. And, you know, I’ve been in for 13/14 years now, and I’ve been a Leading Hand for 10 years. I have had a career break in that time. But I’m still a Leading Hand. A very frustrated Leading Hand, but I can understand why I’m still a Leading hand, because I can’t 100% dedicate to my career and put my career first, you know, I’ve got children, I’ve got caring responsibilities, my husband’s in the Navy, as well. So he needs to concentrate, we’re going to concentrate on his career. And then when it’s my turn, you know, I’ll tell him to move over, I’m coming up. I’m coming up to takeover. But yeah, there’s lots of things and we understand, we understand why, ermmm….
Steve Bomford 17:21
Do you know, do you know Bex, talking to you, I must admit, and doing a bit of research before we spoke, before we recorded this session; I was genuinely surprised at my own complete lack of knowledge. You know, I mean, obviously we’ve talked and I think, I think in some ways, that’s kind of what we’re talking about, isn’t it? Because immediately you sort of, conjure up a mental image of someone with a disability, whatever disability is, and then all the kind of stereotypes immediately follow, immediately behind that. And I think, if you don’t have any lived experience, or know somebody who has lived experience, this is quite a difficult subject to understand in the sense of what you’re going through, what the individual’s going through, the person with a disability. And I think that’s what I find very interesting about this. And you kind of managed to achieve all of that, raised awareness whilst you know, working, having two children, husband at sea, I think all of that’s quite, quite important; but I think the understanding of the experience is the difficult thing here for people who have no, can’t relate to it. And I think that’s kind of what’s interesting about what you’re talking about, well one of the things that’s interesting about what you’re talking about here.
Bex Fyans 18:24
That’s exactly correct and that’s what we’re trying to do in Defence, is give people an understanding of what it’s like to be in the shoes of a carer or somebody with a disability. When we, when we first had our diagnosis that Sebby was going to be born with Down’s Syndrome, I asked somebody, I spoke to them on the phone. So will he need to go to a special school? Will he need supportive equipment? Will he need this? And they said, “No, no, you know, he probably won’t need any of that.” But straightaway, you think ‘disability’ and you see what you see, you know, what you’ve been brought up to see, what the news has told you to see, what TV has told you to see, all of those things. And hopefully, I’ll talk to anybody that will listen, but hopefully, I’ve managed to share my lived experience with enough people for them to sort of say “Now, you know, I actually know somebody with a child that has Down’s Syndrome.” After my coffee morning, just going back, in at HQ in 2018, so many people come up to me afterwards and said, “My brother’s got Down’s Syndrome. My sister’s got Down’s Syndrome.” And then from that point onwards, they would always smile at me and we’d have a chat and it was just a way of bringing you closer together with somebody. And we held a carers event in Navy Command HQ. We held a couple and it was for military and civil servants. And I looked at some of the people in the room and I thought I’ve known you for years. I walked through that door every day and I look at you and I say good morning, but I did not know you were a carer. And that was the most powerful thing about networks and that’s why it’s so inspiring you know, it just gives that extra peer-to-peer support to people when they need it.
Steve Bomford 20:04
I think, I think that’s really important because you obviously judge a person by however, you know them, you obviously don’t know what’s going on in their private lives, their family lives. But also, the sheer number of people this affects because I’m sure I read somewhere that you know, Portsmouth Carers’ Centre, which is not a big city in the grand scheme of things, has something like 7000 members, people that are involved in caring in some way, shape or form, and many of them obviously, quite young as well. And I think that’s quite surprising there’s far, it’s far more prevalent than people realise, if you’re ‘able’, shall we say.
Bex Fyans 20:36
And if you’re in that area, so my sister is a carer, her husband had a stroke a few years ago. And then before that, she was a carer for my Dad. I think at some point in your life, you’re going to care for somebody, but just some stats taken off Carers UK, 3 million people in the UK juggle work with caring, that’s a huge number. And how many of those people actually will, you know, come out and say that they’re a carer? I know, my husband doesn’t like to admit it, because, you know, he, he’s, he’s a man, I don’t want to sound, I’m not not sexist or anything, but that’s the sort of environment, he works with lots of men, you know.
Steve Bomford 21:17
A lot of that responsibility will fall on women, won’t it?
Bex Fyans 21:22
It does, it does tend to. I do know, some really, really good Dads out there who, Mum goes to work and Dad cares for the kids at home. And it’s, it’s brilliant. You know, however it works in your household. But yeah, one in five carers give up. So in my speech, when we did the launch, I said to everybody in the room, “I love being in the Navy, it is who I am. But as soon as the Navy doesn’t support me to be a carer with flexibility, compassion and understanding, then I’ll have to make that difficult choice between the Royal Navy and my son. And you know, it’s gonna be my son every time, sadly.” But yeah, let’s work together. Let’s open everybody’s eyes and say, ‘Let’s be a bit more flexible’, in certain environments, because we are operational we know we can’t do that. But just ask your Oppo, your friends, your colleague, ‘How are you?’, check in. I know lots of carers that have a really tough time but they come to work and they feel that they have to work so much harder than everyone else, because they’ve got a point to prove. It’s like they feel that they have to be there. They want to be there. So they have to work harder.
Steve Bomford 22:32
And also people are so reluctant to ask for help. I think nobody likes to… I mean, we talked about this before, there’s a sort of stigma with all of this isn’t there. And I think that’s kind of what’s driving people’s behaviour in some cases, that you just don’t feel like you should ask for help. It might be culturally, it could be any number of different reasons why people don’t, but obviously, if you don’t seek help, things are going to be a lot more difficult for you.
Bex Fyans 22:56
Yes, definitely; and there is help out there. And a good thing about the CANDID Network, we’ve got a Facebook page, Twitter page, we do offer peer-to-peer support, we signpost people so, for example, a really, really good thing is a company called Kings Camp, Kings Active. So it’s a summer camp for military kids that they can go in the summer. And it’s been operating for a few years. And I applied for Sebby a couple of years ago, and was turned away first time and said, Well, we can’t look after him, we can’t provide enough care for him, he needs a one-to-one, he needed somebody to help him change, somebody to make sure he ate and drank and, you know, he can’t talk very well, so just make sure he was safe. And we had to go away and find our own one-to-one and our own funding. I asked all the Service charities and for some, you know, red tape, they couldn’t give us funding, there was just one Service charity that came through in the end, which really, really helped us. And we had Sebby’s one-to-one from school, who’s been brilliant, and he’s been with him every year. But because of that, because I pushed and pushed and pushed and I knew some of the right people to talk to, Sebby was able to attend that camp and be included as all the other kids. Now how many more kids out there, that are slightly different, with a disability or something like that and they’re not included, they’re left out and Mum and Dad don’t have the fight, or the willpower to keep putting up that fight for their kids. That’s what I always worry about.
Steve Bomford 24:32
I’d agree and of course those shall we say, ‘able children’ never get to see ‘different children’ to use your phrase do they; and so that perpetuates the kind of stigma, doesn’t it; when suddenly you encounter something new later on in life.
Bex Fyans 24:45
Yeah, yeah and Sebby, he goes to these camps, and he just gets loved by all the kids and he laps it up. He loves all the extra attention. And he gets so lazy sometimes, the older girls go, “Oh Sebby can help you with your coat?” Yeah, he can put his coat on himself, he just you know, he loves the attention. But every time we drive past Temeraire, that’s where they do the camp, he says, “Hockey, hockey” and he still loves it. And hopefully he’s gonna do it this summer with his brother, Ben, which will be awesome. But yeah, you know, there’s lots of things out there that people don’t know about necessarily, people at the top who are trying to reach out to all types of people. Unless they know, people don’t speak up. People are too scared to ask for help, as you say, or people are too scared to speak up. So that’s kind of what I’ve done, in the last few years. I’ve spoken to the right people and said, “Look, how about this? and what about this? Think about this person.” And there’s still so much that we need to learn and a journey that we still need to go on, I think.
Steve Bomford 25:48
Yeah, absolutely. So how do you think Sebby has changed the Royal Navy? Through all your tireless efforts, how has he affected the Royal Navy?
Bex Fyans 25:57
So, for example, Sebby straightaway, as soon as he was born, he’s given me a purpose to be his advocate, and be his advocate and other people’s advocates. I’ve met lots of people who, who don’t have the confidence to stand-up for themselves or their children. So I’ve used that to advocate for people in the Armed Forces, I’ve kind of got myself hopefully a little bit of a good reputation now. People do come to me and ask me about Service families, how we can help them, they come to me for advice and assistance, or just general support. Which is really, really nice I think, I feel privileged to be asked to do that. But I think since Sebby, was born, me being back at work and all the work that I’ve done with the RN Disability Team and the Chronic Conditions Network; he has helped me be confident to speak out for him and other people and that’s exactly what we’ve done. And things are changing for the better still, you know, the MOD are starting, well they are very, very inclusive, and they’re starting to open more doors and look at things differently, which is what we need.
Steve Bomford 27:10
Which has got to be a good thing because it’s not historically how you visualise the Armed Forces at all, is it? It’s not necessarily an organisation you automatically assume, with everybody being involved for lots of different reasons and some of them sensible reasons, of course, if you’re obviously not ‘able bodied’ you can’t Serve or easily Serve. So that’s really, really good to hear. So, it’s not like you haven’t achieved a lot so far (both laugh), you’re not that old, I don’t know exactly how old, but you’re not that old; what else do you hope to achieve? What is there left to achieve for you?
Bex Fyans 27:43
I don’t know, you know, I have achieved a lot so obviously, was nominated, awarded wit,h very graciously awarded with an MBE in October, for my help with, my work with inclusion and diversity in the MOD and the local community, which was a great honour. But yeah, to be happy, I think. I’d like to slow down a bit. As I say, I’ve been working very hard over the past four or five years, and I’m a bit tired. So to have some children, to concentrate on me for a bit, to concentrate on my career, possibility to get promoted, I think.
Steve Bomford 28:28
Is there anybody we need to address that specific comment to? Who do we need to talk to? (laughs)
Bex Fyans 28:35
Well I’m, you know, we’ll see what comes, we’ll see what comes. There’s nobody that can speak to unfortunately, I don’t think, to get that to happen. But it’ll come when it’s ready, I think. But yeah, to have a good work life balance, and to work for a Armed Forces that’s inclusive and accepting. And to work for a flexible, compassionate employer. I don’t think anybody else would ask for much more. And to come out of lockdown, of course and get back to normal (laughs).
Steve Bomford 29:06
Just as you were talking there, I was thinking about that. How has that, how has lockdown affected Sebby? Is that something he’s aware of? Because obviously school would have stopped, I guess?
Bex Fyans 29:13
Yeah, the first lockdown, he was Shielding because he had pneumonia a few years ago. And he was very poorly in hospital. And he was Shielding and he didn’t go to school, and he really suffered being out of a routine. So the second lockdown, we kept him in school full time because he’s got an educational health care plan. And that really helped him, but his brother, who’s a typically developing child, really struggled. He was only in school for two days a week and he really struggled. So I think this lockdown period has really effective children, young children especially. But there are lots of different children out there with additional needs that have been able to go to school, that haven’t been able to go to school, it’s been really difficult for parents as well, because they’re trying to manage work and the guilt that you have to decide between work and your child. It’s, it’s heavy. And as soon as Ben went back to school full time, I felt that guilt lift off my shoulders. Now I just have to concentrate on work from eight til four Monday to Friday. And I’m really happy about that. So I take my hat off to the amount of parents that have been working at home, whilst home educating children. It’s, it’s been tough. I’m not going to lie.
Steve Bomford 30:29
No, can’t be easy, can it. Let’s hope these vaccines all work and we can get to some sort of normality. You mentioned, World Down’s Syndrome Day is on the 21st of March, which is not too far away now; how do people get involved in that? What could they do?
Bex Fyans 30:46
So, we have something called ‘Lots of Socks’. So from yesterday, our whole community are wearing odd socks. You walk around in odd socks and people say, “Why have you got odd socks on?” Well, Chromozome 21 three represents the odd socks for some reason. One year, I got the Spinnaker Tower lit up, which was really, really good. We do have lots of awareness events going on. So cake sales. In typical world, I would give an assembly to my son’s schools, and the kids still see me around the street, “Oh, you came and spoke in our school about Sebby?”, I said yeah, you know, I’ll do anything to raise awareness. But there’s lots of amazing things going on. Raffles, only the other day I won a kilogramme of sweets, I’m really happy about receiving that (Steve laughs). But it’s a chance to get involved with the local community. We’ve got the Mayor, tweeted the other day with his odd socks and we’ve got some really, really great celebrities on side as well. Just about raising awareness for us, all over the world.
Steve Bomford 31:49
So are we asking, or are you asking rather, people to take pictures of their odd socks? Is this how people can get involved on social media?
Bex Fyans 31:56
We are. Yes, we’re asking people to take pictures of their odd socks and it’s going on our Facebook Portsmouth DSA, our Facebook page and Twitter page. And as I say, there’s a raffle and there’s lots and lots of awareness campaigns going on, I think there’s a prize for the best odd socks as well. I’m not really allowed to, but I’m going to send my son in to school with odd socks on, the craziest socks every day for the next week (both laugh).
Steve Bomford 32:23
That’s absolutely brilliant. So, with all those, you’ve mentioned, a few Facebook pages, websites, all this kind of stuff, if you send that through to us, we can post that into the description of the podcast. For our listeners that want to find out more, that will be available in the description of the podcast. I’d like to say, thank you so much for agreeing to do this, it’s been absolutely fascinating. I have learned an awful lot that I didn’t know, prior to meeting you Bex, so you’ve achieved something else, albeit very small in the grand scheme of things (Bex laughs). So thank you for that. Thank you for coming on.
Bex Fyans 32:52
Thank you for having me and just yeah, I feel totally honoured to be part of this, because you’ve had some pretty inspirational people on board. So thank you.
Steve Bomford 33:01
It’s a pleasure. Thank you very much. Well, Mike, that was an amazing story, wasn’t it. So much in such a short space of time, I think?
Mike Davis-Marks 33:12
Absolutely. I was taken by a statement she said right at the very end, which was that, she’d listened to the podcast and she was pretty inspired by the people that we’d had, that you’d had on it before now. And I was just thinking, “But you’re one of them, Bex. Actually, you’re one of the most inspiring people we’ve hard. You’re fantastic.”
Steve Bomford 33:31
I thought she was talking about us?
Mike Davis-Marks 33:33
Well, let’s, let’s, let’s be realistic here. Me possibly. But you? No.
Steve Bomford 33:38
Fair enough, fair enough.
Mike Davis-Marks 33:40
I know, I thought, “Wow, what a fantastic person.” I can see why she won National Service Woman of the Year, in only a second year of running. I can see why she was awarded an MBE in the Queen’s Birthday Honours in 2020. And she’s done that as a Leading Writer in the Royal Navy and I’m not sure if all your listeners know what a Leading Writer is? But they’re kind of the backbone of the Navy. So we use the term ‘Writer’ to mean Admin Administration Clerc. They do everything that makes the Service function, all the HR functions, payroll, pension, everything, everything that makes… the glue that holds the whole bit together is done by the ‘Writing Branch’ or the Admin Branch. And she’s a Leading Writer, which means that she’s the equivalent of a Corporal. So she’s a Superior Officer, under Queens regulations for the Royal Navy. So it’s a lot of responsibility for someone that’s relatively junior. But we can’t, we couldn’t exist without them.
Steve Bomford 34:46
No and doing all of that, of course, she’s had a career break, she’s had a young family, her husband is I guess frequently deployed as well. So yeah, that’s a lot to achieve with everything else that’s going on.
Mike Davis-Marks 34:59
What was really interesting is, you know, when she talks about Sebby and being aware that Sebby might be Down’s Syndrome before he was born, how she dealt with that, how her husband didn’t deal with that. I thought, what a remarkable person to say, actually, this is a possibility, I’m gonna start planning for it just in case it happens. And when it happened, although she probably wasn’t… you’d never been fully prepared for things like that. She mentally was adjusted to the fact that this might be the case. And it didn’t seem that she took a… hesitated a step at all, in terms of dealing with it, perhaps unlike her husband and I might be slightly unfair there, but what a fantastic way that she dealt with it. And then to use that as a platform to, you know, help other people in similar situations. She talked about the Portsmouth Down Syndrome Society, which you became a member of, and then a Trustee of and then the Secretary of and then she talked about fundraising, you know, abseiling down Spinnaker Tower, you didn’t ask much about that, by the way, you could have done and then mentoring new parents in you know, that were faced with Down’s Syndrome babies themselves. Extraordinary Really.
Steve Bomford 36:23
I didn’t ask about the Spinnaker Tower abseiling because I was thinking I might ask you if you’d like to do it? (Both laugh)
Mike Davis-Marks 36:30
I’m not sure Spinnaker Tower’s got enough strength, vertical strength to withstand me abseiling down it, so don’t even go there, please. The other thing, I think it was for you, and definitely for me, there was quite a lot of learning about stuff we’d never thought about before. And I suppose you don’t think about it if you’re not… if you haven’t had some experience, either directly or indirectly through friends and family, which I have had very little. But we learnt I think that the 21st of March, which is just past when this podcast goes out to broadcast, is World Down’s Syndrome Day, how about that?
Steve Bomford 37:12
It was very serendipitous and a good coincidence. I must admit, taking up on your point about learning a lot, I think there’s an element, you know, when you think people are going through some difficulties in life, whatever they may be, you’re afraid to ask. Or you think you might ask a stupid question, or it might come across as being, you know, a bit ignorant, if you know I mean, so it was fascinating to have someone who you could talk to, or I could talk to, and actually ask questions that I might ordinarily not be asking.
Mike Davis-Marks 37:39
Absolutely. She raised that whole issue about people not knowing how to talk about disability. And there’s a famous poster, I remember seeing on the London Underground, which is a person with a hole through them and the caption says, “Please don’t look through me.” And I think that’s really true, people find it quite difficult to talk about disability. And she’s talking about that’s changing, people are starting to be much more upfront about it, both whether they’ve got a disability, and she spoke about the Second Sealord came out recently to talk about an aspect of autism that’s in his DNA, which is incredibly brave. He’s a submariner, by the way, so one of the chosen ones, we’re all probably somewhere on the autistic spectrum. But I think that she’s done an awful lot to get people talking about a subject that is quite difficult for people that had no experience of it and I think that’s, that’s one of the real achievements that she’s done.
Steve Bomford 38:36
Absolutely, and encouraging people to come forward as well because, as she said, there are many people Serving who have family members, immediate family members that might be going through some of these difficulties, who are still, even in this day, reluctant to come forward and seek help when it is available for them.
Mike Davis-Marks 38:52
Indeed. It’s that old phrase, “You don’t know what you don’t know.” And you know, and actually, she talked about, you know, since she got into networking, networks and meeting other people in similar situsations, she talks about meeting people she’d known for some time, and actually thought she knew quite well, but didn’t know that they were a carer for someone that was disabled and I think that’s true of all of us, we probably, you know, have this peripheral vision of a lot of people we know, that we don’t know that much about in terms of things like this.
Steve Bomford 39:23
Yeah and I think that thing about caring is quite interesting because I think it’s true to say that a lot of people just do this because it’s the right thing to do, and don’t necessarily recognise themselves as carers, or as we’ve just said, get the support they may be entitled to from wherever it may come.
Mike Davis-Marks 39:39
Yeah. She also talks about stereotypes, you know, we put all people with disability into a box and stereotype them and actually, that’s not true. And actually we talk about disability, as something, as people that can’t do things. And I think the language needs to change. I think the language needs to be about, what you can do, not what you can’t do. Let’s talk about what people can do. And therefore, the disability doesn’t become a barrier it just shows you what, you know is the art of the possible. And a lot of people with disability can do things better than able-bodied people. I’m, as you probably know, I used to be involved in inter-Service skiing and some of the… particularly Royal Marines, that used to come down, that had no legs, used to come down on sit-skis, could ski much better than I could on two legs and I wasn’t ashamed to admit it (Steve – Yeah)… and that was before the gluwein (Steve laughs).
Steve Bomford 40:38
I think the Paralympics is an obvious example there, isn’t it, of how people can achieve extraordinary things and many of our guests, of course, have become disabled through circumstances beyond their control and the way they’ve responded… I think it’s important to have these kinds of conversations because it affects many, many people in all walks of life.
Mike Davis-Marks 40:56
So you’ll be pleased to know that I am wearing spotty socks in honour of this interview, and I shall be wearing them on Sunday for World Down’s Syndrome Day as well, although most of my socks are spotty, so that won’t be too difficult in my case.
Steve Bomford 41:13
For our listeners’ benefit, I’ve already had the pleasure of Mike shoving his feet up in the camera. It’s not a pretty sight at the best of times, but I can confirm the socks are spotty.
Mike Davis-Marks 41:23
Fortunately, there’s no smell sensors in our computer link-up, but that’s good. And she talked about sense of purpose, Steve, and this is a recurrig theme in all of the podcasts about the sense of purpose and she said how her sense of purpose changed when Sebby was born and it became, “To be his advocate”, she said, “My sense of purpose changed to be his advocate”, I thought that was very powerful.
Steve Bomford 41:48
Yeah, absolutely and I think it’s also manifest in Sebby, isn’t it? Because he’s, you know, in a ‘normal school’, if that’s the right phrase, you know, he’s with other children his own age, there’s no ‘special circumstances’ given to him, although he has support whilst at school and I think things like that are great to hear. Absolutely great to hear.
Mike Davis-Marks 42:04
So do I. So I mean, what a wonderful, authentic, absolutely inspiring person that you know, is a Leading Writer in the Royal Navy, a Serving Leading Writer in the Royal Navy. So I’ve got one plea for anyone that’s listening here, particularly Second Sealord, if you’re tuned in. She’s still a Leading Writer after I think she said 10 years, if she’s not capable of inspiring and leading people through what she’s done as a Petty Officer and beyond, I don’t know what is. She should be promoted, not because she’s not ticked all the right boxes in her Career Task Book, but because she’s capable of leading and inspiring, probably better than a lot of people senior to her. So waste not a day please and get her promoted straightaway. I think the Royal Navy would look so much better with Petty Officer Fyans rather than Leading Writer Fyans.
Steve Bomford 43:03
I couldn’t agree more, you need to make that happen, Mike, if you’ve still got that kind of influence.
Mike Davis-Marks 43:08
I absolutely don’t. But I’m hoping that somebody might be listening to this that does. Second Sealord, you’ve been named.
Steve Bomford 43:14
I feel a tweet coming on (Mike laughs). That was a fascinating conversation, wasn’t it? Thank you very much for that, Mike.
Mike Davis-Marks 43:20
Rachel Owen 43:26
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